Bed-tethered Life Hacks: Bedside Supplies

Photo of Rebecca's bedside setup
Photograph of Rebecca’s bedside setup . The colors are warm, in red, pink and orange. There are some pops of turquoise. Two carts and a school desk are visible, as is the side of the bed. All the contents are described in detail in the post.

I spend about 90-95% of my time in bed. I’m able to get up to use the bathroom, grab something from the kitchen, get a book from the living room, but I don’t move around much more than that. And my goal is to do everything I can to minimize how much I move. That’s because my energy production and recovery system is severely malfunctioning from ME/CFS, and the goal is to do as little as possible to maintain, and in some cases regain, function. Over the last six months, I’ve been slowly iterating the design of the space I spend the most time in so that it can support me in the best ways I know how. I used to love those “what’s in your bag” posts. So I thought I’d do a long “what’s next to my bed” post.

To start with, there’s my bed itself. I have an amazing mattress, and this year I’ve added two wedge pillows. My back went out again in November, and they’ve made a big difference in supporting me and minimizing some of my pain. There are a variety of pillows with different characteristics, including a meditation cushion and a yoga bolster. I rotate a sheet on top of any blankets on my bed so that I have an easy way to keep things clean with a dog and a cat. It’s easy to pull a sheet off the bed for the wash, and replace it with another. I can do this myself if I need to, where I can not change my sheets or do my laundry myself. Right next to my bed is a poof that my dog uses to springboard herself up into bed with me, or sometimes she uses it as a dog bed.

NIghtstand. It’s an old metal cart on wheels I found for free on the side of the road. It is exactly the right dimension to fit in the small space I have next to my bed. Directly underneath it is the power strip that most of my electronics are plugged into. On the bottom shelf, my trash can.

On the middle shelf a beautiful wooden box that holds my face-care products. Exfoliating face wipes can take the place of actual washing. Moisturizers and a face brush.  I sometimes wear simple makeup – brows, mascara, lipstick (these can greatly increase one’s video-call confidence, and sometimes they’re just fun!). They’re all in the box too. And next to it is a two-sided makeup mirror with a battery powered light ring.

The top of my cart holds my sunrise-simulator alarm clock. While I rarely use an alarm these days, it is also a dimmable light. Wireless charger for my phone. An old letter sorter that belonged to my mom is one of my favorite organizers. It holds my paper planner, note paper, pens, pencils, scissors, remotes, and my tablet. There’s a long charging cable wrapped around the corner support on the cart. It charges my tablet, and every night it charges my Fitness tracker.

On top of my cart is a three-tiered wire rack. It’s designed to be mounted on a wall, and I believe I originally used it to hold hats and gloves and scarves inside my kitchen door. But the bottom is flat and sturdy, so it can stand. The bottom tier has things like moisturizer, nail file, sleep mask, microfiber cloth for my glasses. The middle tier has tissues, hand and body wipes, dry shampoo, a hair brush, tape roller, floss picks. The top tier has two of my four daily pill-strips, and other medications and supplements I’m likely to need with some frequency.

An old school desk is to the right of my bed. Inside it are my journals/notebooks and my laptops. They are easy to reach and easy to charge here. There’s a pencil case with markers and highlighters and such. I don’t use the desk as a desk, but I often use it to hold the tray that comes back and forth between my room and the kitchen twice a day with my food. Under the desk is a basket that holds some books and miscellaneous papers. Somewhere down there on the floor are my flip-flops.

Next to that is a rolling IKEA cart. The wheels are super smooth, so it is very easy to move this. The top tier holds my water bottles, my other two pill strips, a ceramic tumbler, a dish for my pills, electrolyte powder. The middle tier I’m using for some additional supplements that I need to dissolve in liquid, and also snacks – currently pistachios, corn Chex and potato chips. The bottom tier is a mishmash of stuff, but is often holding accumulating recycling.

It’s all an experiment, and I iterate constantly. In fact, I’ll have a new bed soon. It will take up a bit less space than the one I have now, at 6-8″ shorter. And it will make my air conditioner setup much less cumbersome.

 

Quality of Life

Photo of Rebecca and Marigold relaxing on the porch
Photograph taken from Rebecca’s vantage point on the couch on her front porch. Her feet are propped on a table, and iced coffee from Gimme! and a ceramic tumbler on the table. Marigold dog is standing further out, looking off the porch across the street. There are lush green ferns on the porch, and leafed out trees past the porch. A hanging basket of yellow and peach flowers hangs in the upper left corner.

Here’s the thing about having a really disabling chronic illness. It’s unpredictable. And very difficult to plan for the future. While I have several conditions, the one with the most dramatic impact on my life is ME/CFS. I could improve. I could worsen. There’s no way to predict. It’s not well-understood as a disease process, but there is fast-paced emerging research. Which means there could be treatment in a few years. But there’s no way to know.

For most of us, the unknown is pretty uncomfortable. I had a long-standing habit of thinking I could control things. (Ha!) But one of the things I came to understand (in part through my dear friend and amazing life coach Jaya), is that denial of reality is not helpful for me. And that’s what’s often going on for me when I’m in a cycle of attempts to control and frustrations of it not working. It’s what I now personally call “beating my head against reality.”

Luckily, I have a meditation practice, and that has helped bring me to a place of a decent amount of acceptance of my current physical reality. Once I’m willing to see my current reality and accept that it is true, quality of life can become a priority. Not trying to get better (that would of course be awesome). Not waiting to see what might happen down the road (although I track my symptoms carefully and monitor research advances regularly). But how can things be the best they can be, now.

Quality of life may mean different things to each of us. Some things it has meant for me: Symptom relief. Finding a good aide. Asking for help. Investing in a new tablet so I can read free books from the library without having to exchange physical objects in a place. Asking friends to rearrange my furniture so that it works better now that I spend 95% of my time in bed. Learning to rest more often. Staying connected with friends and loved ones.

The needs and answers keep evolving, and I’m finding it works well to approach much of it as an evolving experiment.

I became bed-tethered about nine months ago. At the time, my home did not change. It’s just that now I was in the same room all the time. But over time I started noticing, hey I’m in bed everyday. I haven’t been out to the couch in several weeks. And realized that the laptop I was using to watch TV was becoming sort of inconvenient. And I had a spare monitor lying around. So it came into my room and I brought the Fire TV stick in from the living room. And now I could watch shows without dealing with balancing and positioning and overheating concerns. And then I realized I’d been in my room for many months. Why am I keeping the TV with the better picture and the volume remote in the living room when I never go in there? So the TV came into my room and the monitor went out.

Something similar has been happening with my nightstand. I realized slowly that the more that I could keep next to me, the less time I could spend standing up (which is actually bad for me). But there isn’t a lot of space next to my bed. About 14 inches. But oh, I have this rack in the basement. And if someone brought that up, I could add it on top and have three bins. Oh, if I re-purpose my mom’s old letter holder I could have a place to keep my tablet and my planner and the remotes and some pens. Oh, I’m doing something really awkward to manage my laptops and keep them in reach. Let’s try something differently awkward that might solve other needs that I’m noticing.

I’ve got a couple of new and big experiments in the lab right now, and I’m looking forward to sharing how they’re going once there’s some more data. Have you run any interesting experiments, or found ways to improve your quality of life?

 

Disability and Assistive Devices

Image of Rebecca on her mobility scooter at Cascadilla FallsWe are not shown many examples of disability in the media, and the ones that we are shown are often portrayed as tragic, or in the realm of inspiration porn. People seem to have an idea of disability as being black or white or in extremes. Like, someone is totally blind or totally deaf or their legs don’t move. But disability is so much more vast than that!

I hear the current stats are that 1 in 5 Americans is disabled in some way. For many, that means chronic illness. Chronic illness can have all sorts of impacts on how people move through the world. Maybe they have to take medication. Maybe they have to carefully monitor their diet. Maybe they need regular treatment at a medical facility. Maybe they can’t stand up as much of others because their heart rate or blood pressure doesn’t respond well. Maybe they have to carry emergency medication or a way to communicate with strangers to help keep them safe. Maybe using an assistive device makes something in their life easier, or possible.

I have spent years now listening to the stories of strangers on the internet as they recount countless times that they have been hassled by strangers for using disabled parking spaces that they are fully entitled to (your doctor has to fill out forms to certify your disability for the DMV), harassed for using a power cart in a store and being young, being gasped at when standing up from a wheelchair to reach something.

Lately, I’m hearing another story as well, the one where someone’s loved one thinks they shouldn’t get a device that would improve their quality of life, wanting them to suffer through even if it means living a smaller life. Sometimes it’s a lack of understanding of their illness, sometimes an externalization of something the loved one wishes was not true. Sometimes even medical professionals act like it would be a failure or a character flaw, or they think the the patient is resigning themselves, not trying hard enough to get better, or will somehow make themselves more ill. None of this helps the disabled person who is just trying to improve their quality of life.

Visible assistive devices are difficult for many users to choose to use. They have internalized these messages, many of which are born of deep entrenchment in the medical model of disability. Many of us are introverts who don’t want the attention that it brings. And none of us want to be in a position to have to explain or justify themselves, and certainly not about the intricacies and challenges of moving through the world in our bodies.

The first time I went out in public with a cane was terrifying for me. I was so worried about how to navigate my professional life. My brain fog and cognitive problems were beginning to set in in a way that terrified me when it came to my job. I was an analyst at the time, and my job required me to engage in complex thinking and clear explanations of complicated data and processes. And I needed a cane because the neurological problems were also affecting my balance and gait, making me tired, and giving me pre-syncope. It must have been sometime around 2005 or 2006, and I had yet to be diagnosed with POTS or ME/CFS. I didn’t understand what was happening, and I was desperately trying to find answers. And I was afraid that I would lose my job if I was found out.

I’m also a private person (says the woman writing a blog post about her illness). I’m happy to use my life as an educational or supportive story for others, but only on my own terms and on my own time. I worked in a place that was theoretically very supportive of staff when things were going on in their lives, and where relationships were highly valued. But that doesn’t always translate to good boundaries or thoughtful interactions.

The days before that first day at work I practiced possible lines with my partner. Things I could say to theoretical questions I got asked. It helped me feel more secure, and gave me a little bit more confidence to do this hard and scary thing.

I will never forget a conversation I had with a colleague at the elevator. I was holding a laptop and files in one hand, racing to get to my next meeting. I was using my cane in the other hand to balance. We were both waiting. He looked me up and down and said, “What did you do to yourself?”

I’m sure to many people, this sounds like a perfectly reasonable question. But do you hear the blame in it? Not only have I been put in a situation where I’m being asked to explain myself and my body, I’m being told that it was my fault, that I’d done something to cause it. And the assumption was that I had an injury.

I don’t remember what I said. But I remember the feeling of it. And it felt awful. And it felt awful at a time that I was running to a meeting in which I had a significant role. A time that I was trying to prepare for in my head. But a well-meaning colleague had derailed me.

I don’t hold this encounter against the man. But it is a small example of the attention that anyone could have to manage anytime they go out in public with an assistive device. Since that time I have used a cane, a cane with a seat, a rollator, carried a camp stool to use as a footrest. When I was working, I had multiple ergonomic assessments to help support my illnesses, and had a special office chair, two ottomans in my office, and a wooden crate for a footrest that lived in a storage closet outside the conference rooms. I could occasionally be found lying on the floor of my office, maybe with my feet up the wall when I really needed my blood to go back up to my head. It was awkward, but it got easier. And I became incredibly clear that it was just what I needed to do to take care of me. I know some people talked about it behind my back. And I know a couple of colleagues though I was somehow faking my illness. But I was clear about me.

At some point I mustered the courage to use a mobility scooter at Target and at the grocery store. It was the only way I could still do my own shopping. I couldn’t stand very long without feeling faint, no matter how much water I drank and what medication I was on. I didn’t know at the time that ME caused people to draw on energy reserves that weren’t being replenished, and that sensitivity to sound, light, scents and chemicals was just a normal set of symptoms. But I knew that sitting down was the only way I could choose my own ingredients for the week’s menu.

Those scooters are hard to drive! And they make noise when you back up. And the aisles are narrow. And people leave their carts in inconvenient places. And they don’t move their bodies out of the way. And seasonal end cap and free-standing displays are practically an invitation to get knocked over when trying to turn 180 degrees from one aisle to another. Also, stores are full of people. And some of those people stare. And some of those people are people that you know, and maybe not the ones you wanted to run into. But it made something possible that I couldn’t really muster otherwise.

A little over a year ago I purchased a mobility scooter. I was trying find a way to get out of the house, and maybe walk my dog once in a while. And I knew I could no longer walk any distance. I was still letting my dog out to pee in the backyard in the evening, but friends had taken over the daily walks. Oh my gosh it was hard to go out around the neighborhood the first time! I live in the same neighborhood in which I worked. I could easily run into 350 former colleagues, or friends or neighbors. There I was, thinking about my lines all over again.

I was also dealing with something more complicated – operating a machine in a moderately hostile physical environment. I was learning the controls, experimenting with speed, surveying every uneven sidewalk, identifying every tree root, and discovering where there were no curb cuts. While wondering who I might run into, what they might say, what I might say back. It was daunting.

But it was also easier. I knew my scooter represented freedom. I knew it meant that I could go out with my dog, that I could see my favorite waterfall, that I could visit a friend on their porch.  In fact, one day last summer I took my dog to a waterfall, said hi to a friend on his porch on the way back, and got to stay for an impromptu cookout. Without that scooter, I would have been home alone and isolated.

Disabled means lot of different things. Assistive devices are freedom and participation. We are not entitled to other people’s stories.

 

 

 

Signal Boost: What to Do When You’re Bored With Your Routines

Blame hedonic adaptation: the tendency for us to get used to things over time.

Source: What to Do When You’re Bored With Your Routines

One of the things that gnaws at me a little is how much my life has drifted into routine as my illness has become more severe and I spend more time at home. I’ve never liked most routines. Systems, yes. Predictability and sameness, no. To the point where I’ve spent most of my life rearranging the furniture every six months.

I just made a furniture change last week, and I have some ideas for more changes that are bigger. I get fresh flowers maybe once a month or so, and that mixes things up in my sightlines. I’m thinking more about how to mix up my regular activities in the course of the day so I feel less bored.

Are there things you do to mix it up when you get bored?

Reading List: A Woman is No Man by Etaf Rum

The cover image of Etaf Rum’s novel A Woman is No Man. The background is turquoise painted platter, peeled away in one area to reveal a brick wall.

Wow.

I just finished this novel, and it was intense. It hurts to read. It hurts to imagine. And it hurts in moments where it is relatable, despite my culture and privilege differences from the characters.

Etaf tells a story of women’s obligation and pain through the lens of culture, specifically a Palestinian lens. A culture in which women’s lives are proscribed from birth to death.

The prologue begins:

I was born without a voice, one cold, overcast day in Brooklyn, New York. No one ever spoke of my condition. I did not know I was mute until years later, when I opened my mouth to ask for what I wanted and realized no one could hear me. Where I come from, voicelessness is the condition of my gender, as normal as the bosoms on a woman’s chest, as necessary as the next generation growing inside her belly. But we will never tell you this, of course. Where I come from, we’ve learned to conceal our condition. We’ve been taught to silence ourselves, that our silence will save us. It is only now, many years later, that I know this to be false. Only now, as I write this story, do I feel my voice coming.

Three generations of Palestinian women in America struggle with silence and expectation. Know that this silence is enforced again and again by violence and shaming by people who ostensibly should love them.

It is written in the style where different chapters are focused on different characters in different times, and it weaves together a story that is not understood completely until the end.

It is deeply sad and hard and a bit hopeful.

Signal Boost: On Disability and on Facebook? Uncle Sam Wants to Watch What You Post

The Trump administration wants to use Facebook and other social media to help identify people who are receiving Social Security disability benefits without being truly disabled.

Source: On Disability and on Facebook? Uncle Sam Wants to Watch What You Post

I understand the desire to reduce fraud, but…

My social media feed is full of people who are truly disabled and can’t get access to SSI or SSDI. Anything that makes this harder is a problem.

AND

This could go wrong in so many ways!

“But advocates for people with disabilities say the use of social media in this way would be dangerous because photos posted there do not always provide reliable evidence of a person’s current condition.

“It may be difficult to tell when a photograph was taken,” said Lisa D. Ekman, a lawyer who is the chairwoman of the Consortium for Citizens with Disabilities, a coalition of advocacy groups. “Just because someone posted a photograph of them golfing or going fishing in February of 2019 does not mean that the activity occurred in 2019.”

Moreover, people are more likely to post pictures of themselves when they are happy and healthy than when they are in a wheelchair or a hospital bed.”

Folks who are chronically ill and disabled are already saddled with being disbelieved that they are ill. As if being ill means that you aren’t human, that you might not have saved all your spoons for one night out, that you can’t ever do anything enjoyable!

I once had someone assert that I couldn’t have been ill because I clicked the “interested” button on a FB event post! Never mind I do that all the time to keep track of pipe dreams that I can rarely realize.

This is potentially dangerous.

Signal Boost: No. 1 Pacing Tip: How to Unlearn the “Completion Compulsion”

Pushing ourselves to complete a task is the most common pacing mistake most of us make.

“The next step is choosing a different action. Sometimes even with awareness, we can think, “I know I’m running out of energy, but I really want to get this done.” When this happens, it’s because our old programming is tempting us with an unconscious feeling that it will be better for us to continue; there’ll be some kind of reward. Our new knowledge––that it most certainly isn’t better for us to use too much energy––isn’t yet a strong enough neural pathway. Our subconscious doesn’t have as much evidence that it’s better for us to stop than we do for pushing through. In this case, we have to let go of our subconscious feeling that it will be better to keep going and make a conscious choice to do something different.”

This ?. So hard to make the transition. Sometimes I can do it . Sometimes the sense of psychological satisfaction is too great and I push forward anyway.

Source: No. 1 Pacing Tip: How to Unlearn the “Completion Compulsion” – Prohealth

Reading List: Homegoing by Yaa Gyasi

Image Description: The book cover for “Homegoing” by Yaa Gyasi. The cover is orange, with illustrations of the heads of two black women, facing in opposite directions, with yellow graphic waves.

Yaa Gyasi‘s novel “Homegoing” is a masterfully written historical novel. It begins in Ghana, and tells the story of the progression of two lines of a family tree over eight generations. One branch stays substantially in Ghana with a complex relationship with power and complicity with the slave trade. The other branch is sold into slavery in the United States. Each chapter is the story of a different family member, their context, dreams and struggles.

There are many very good books about race in the US available, and I have barely made a dent in my reading list. But I those I have read, this makes the short list of books I think should be required for white folks.

I missed the fanfare when it was first published, but it was recently brought to my attention through a conversation on Rachel Cargle’s Instagram. Rachel, and a couple of other black women I follow, have recently shared stories of personal pilgrimage to places like Cape Coast Castle in Ghana. They have shared a window into their experiences of standing in a place where their ancestors were held captive, tortured, treated worse than animals.

One conversation thread that I saw was about the pain black women were experiencing watching white people visit these places as tourists. A personal desire to have their own experience of grief and healing, without having to see people whose ancestors inflicted this violence. A few white women piped up, wanting to have their own experience of insight and understanding. They were encouraged that they could do that without making such a trip, and that one way to do that could be by reading “Homegoing.”

I think as white folks we are incredibly used to thinking that we have a right to be anywhere we want. That all spaces are ours. That is privilege and supremacy. We can learn to respect that some places and experiences are not ours to have. And be grateful when people of color choose to share their stories and perspectives with us to empathize and learn from. I’m grateful for what Yaa Gyasi has shared here. Her story will stay with me for a long time.